Cysteamine Side Effects

Not all side effects for cysteamine may be reported. You should always consult a doctor or healthcare professional for medical advice. Side effects can be reported to the FDA here.

For the Consumer

Applies to cysteamine: oral capsule, oral capsule delayed release

In addition to its needed effects, some unwanted effects may be caused by cysteamine. In the event that any of these side effects do occur, they may require medical attention.

You should check with your doctor immediately if any of these side effects occur when taking cysteamine:

More common

Abdominal or stomach pain

diarrhea

drowsiness

fever

loss of appetite

nausea or vomiting

skin rash

Less common

Confusion

dizziness

headache

mental depression

sore throat

trembling

Rare

Convulsions

increased thirst

unusual tiredness or weakness

Incidence not known

Blistering, peeling, or loosening of the skin

blurred or double vision

bone lesions

bulging soft spot on head of an infant

change in the ability to see colors, especially blue or yellow

chills

continuing ringing or buzzing or other unexplained noise in the ears

cough

eye pain

hearing loss

itching

joint or muscle pain

loss of appetite

loss of vision

pain behind the eyes

pain in the legs

pain with eye movement

red skin lesions, often with a purple center

red, irritated eyes

reddish purple lines on the arms, face, legs, trunk, or groin

severe headache

sore throat

sores, ulcers, or white spots in the mouth or on the lips

Some of the side effects that can occur with cysteamine may not need medical attention. As your body adjusts to the medicine during treatment these side effects may go away. Your health care professional may also be able to tell you about ways to reduce or prevent some of these side effects. If any of the following side effects continue, are bothersome or if you have any questions about them, check with your health care professional:

Cases of Ehlers-Danlos like syndrome and vascular disorders on elbows have been reported in children chronically treated with high doses of different cysteamine preparations. In cases where histopathological examination of the skin was performed, the results suggested angioendotheliomatosis.[Ref]

Renal

Cases of nephrotic syndrome have been reported within 6 months of starting therapy with progressive recovery after treatment discontinuation. In some cases, histology showed a membranous glomerulonephritis of the renal allograft and hypersensitivity interstitial nephritis.[Ref]

Consumer resources

Related treatment guides

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